Planning your Heart Procedure with Shared Decision Making

The need for a heart procedure or surgery usually means making certain difficult decisions. These decisions often have time pressure and may involve unfamiliar and unexpected circumstances. This is where the help of a caregiver comes in.

The participation of caregivers in the decision-making process can be important. They offer a different perspective, and their thoughts and input could result in less stress and even a better outcome. While a patient might be focused on just the personal impact of a procedure or surgery, for example, a caregiver may look beyond that to other practical matters.

For people with heart conditions, shared decision making has become even more necessary as treatment options have increased. Some of the decisions that you may wish to consider together as you plan for your procedure include:

  • Transportation issues, such as the best way to get to and from appointments
  • Choosing one person to communicate with the doctors and family members or friends about the procedure, outcome, and prognosis
  • The potential need for professional care or assistance afterwards
  • Whether a caregiver will need to take time off from work or school in order to help once the patient is back home

Good Communication Is Key

A first step for caregivers is to become informed about their loved one’s condition and treatment options. One way to do that is to go with the loved one to doctor visits. Being informed means knowing:

  • The diagnosis and prognosis
  • What the proposed procedure is about
  • The risks, benefits, and alternatives of that procedure
  • What to watch for that could indicate an emergency situation

Both caregivers and their loved ones benefit from good communication skills – with each other and with the Heart Team. Be aware that the stress of an illness and the responsibilities that come with it can make this a challenge when making important decisions.

The American Heart Association offers these communication tips:

  • Be a good listener. Listening is the most important aspect of communication.
  • Ask questions. Organize your questions and make them clear and specific.
  • Be honest with each other and with the care team.
  • Talk openly about your fears, worries and needs.

Additional Questions to Consider Together

It’s a good idea to write down your questions, and the answers, to help you make the best decisions together. You can also ask if there is any written information you could take with you.

Some questions that you may want to ask the care team include:

  • Why is this procedure needed?
  • How is the procedure performed?
  • What is the average recovery time?
  • What is the expected outcome?
  • What are the risks and complications of this procedure?
  • What is the cost and how much will insurance cover?
  • If we think of questions later, how can we contact you?

One of the more crucial questions to consider is regarding risks and complications of the procedure. For example, some heart procedures such as transcatheter aortic valve replacement (TAVR), carry a risk of stroke. It’s important to discuss what measures can be taken to help reduce the risks (such as cerebral embolic protection), and talk about potential consequences should a complication arise.

In addition, be sure that providers understand the role that the caregiver is playing in decision making. Reinforce the importance of having the caregiver involved in all conversations.

And finally, take time to make decisions about care. If it means having to wait a few days and it’s not life threatening, tell providers that you need some time to discuss it together.

References:

  • AARP Caregiving Resource Center. Questions to Ask the Doctor. Available at: https://www.aarp.org/relationships/caregiving-resource-center/info-08-2010/pc_questions_to_ask_the_doctor.html. Accessed October 26, 2017.
  • Allen LA, Stevenson LW, Grady KL, et al. Decision Making in Advanced Heart Failure A Scientific Statement From the American Heart Association. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3893703. Accessed October 26, 2017.
  • American Heart Association. Communication Tips For Caregivers. Available at: https://www.heart.org/HEARTORG/Support/Communication-Tips-For-Caregivers_UCM_301841_Article.jsp. Accessed October 26, 2017.
  • National Caregivers Library. Making Caregiving Decisions. Available at: http://www.caregiverslibrary.org/caregivers-resources/making-caregiving-decisions.aspx. Accessed October 26, 2017.